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Saturday, June 25, 2016

It's been an interesting couple of days...of course. When is it not interesting around here?

Where to start...

Well, for starters, Spencer is moving home this week! Yay! I'm excited but sad too. I'm always happy to have him home but the circumstances aren't favorable. He was evicted from his place in Utah. Apparently, it is the law in Provo that only three single people can live in a rental house. He was the fourth guy and the last to sign a contract so he was evicted.

It is really such a strange twist of events. It's a college town and you know the majority of apartments and homes down there are crammed with a lot more than just 3 students. Someone must have turned them in because it just seems like such an unlikely thing to happen. What are the odds? I just shake my head and wonder why. He had to give notice on his brand new job and now he is jobless again and will have to find work here. He is in another contract for housing, starting in September but then it's moving again, finding a new job...again. What a crappy deal. I feel really bad for him. It makes me think that there is a reason that he needs to be home right now.

Friday, we had a long day at the University of Utah Medical Center. Shelbie was not feeling well to start with and the pulmonary function tests just about killed her. They had to keep stopping because she was on the verge of passing out from not enough oxygen. I kept thinking, "Finally! Someone else sees what I witness every single day!"

But at the end, the tech said, "Well, she looks great! We don't need to do the last couple of tests because she passed."

"Are you kidding me? Look at her! She is practically turning blue. She can't even breathe! That is the picture of someone with a healthy set of lungs?" I asked.

"I mean, clearly she isn't doing well but all I can say is the numbers look okay. You will have to discuss this with her doctor but I called her and she said to cancel the remaining tests."

My Wasband and I were a little, tiny bit livid. We knew nothing about this new pulmonologist and we were just fed up. We jumped far and wide to various conclusions and Shelbie was crying and sick and the whole thing was becoming a disaster of epic proportion.

We headed upstairs and I just kept telling myself we could get a second opinion and that's the only way I could propel myself forward and walk into the clinic.

The doctor was well over an hour late so it gave us lots of time to unwind my tightly wound head. She eventually came rushing through the exam room door in a frazzle. Apparently, she had been dealing with a "threatening patient" and hospital security was called. She would say something and then her phone would ring and she would talk to the person on the phone. Then she would apologize and we would get back to things and there would be a knock on the door and she would leave. It was so bizarre...Finally, she just explained that she needed to work with the security and now the police who were on the scene in the next room. I actually felt very sorry for her because clearly, she wanted to be there for us but I'm sure she was quite frightened. She kept thanking us for being patient and cheerful and that it meant a lot to her.

Anyways, beyond that, things calmed down and she was amazing. I really like her and it was such a blessing that we meshed, especially after such a rough morning of testing.

However, we did not receive good news. She said, "What has been done about the pulmonary embolism she has in her lung?"
"She doesn't have a pulmonary embolism, she has arteriorvenous malformations, AVM's."
"You are right, she does have AVM's and she has granulomas and some scar tissue and lymphadenopathy but she has a blood clot as well."

My jaw dropped! She pulled out the radiology report from a year ago and showed me! She said she had looked at the films and saw it herself!

"I'm so sorry! I didn't know. Our doctor only mentioned the AVM's and granulomas and I didn't request a copy. I'm so sorry!" I instantly felt sick and tried to balance myself on the chair I was sitting in. I have no idea what anyone else in the room was thinking.

"So no one is doing anything about the blood clot. What about the AVM's? Any talk of coiling them?"

"We were told there was nothing they could do."

Long story short...She believes that Shelbie's breathing problems are complicated. Some may be from the AVM's, especially if they have grown in the last year. Some is caused from her worsening Asthma but her real worry is that her heart problems are advancing and her heart is not getting the blood pumped correctly. Not only that, a lot of the symptoms she is having are directly related to that blood clot in her lung! She has at least one hole in her heart, AVM's around her heart, increased pressures and two faulty valves. Her heart is working way too hard. They did eventually have her do the last test which was a 6 minute walk in order to qualify her for oxygen but her saturation levels didn't drop low enough to qualify. During that test, it was noted that her heart rate sky rockets within the first 10 seconds of exertion- just a simple walk. Not even a fast walk!

The plan is that she will be meeting our Cardiologist who's office is just across the hall from hers, early Monday or Tuesday. She wants to repeat the CT Scan with contrast and get an echo and then whatever else the Cardiologist wants before we go down for clinic in a couple of weeks. They will hopefully have a plan. She could see that Shelbie isn't doing well and was appalled that no one has bothered to address the blood clot. When we told her that Shelbie had a neurological event in November but they couldn't find the source of the clot or bleed, she just shook her head and said they really need to get this sorted out sooner than later.

I have confidence in her and I'm glad I was able to let the frustrations go from the testing and be open. Shelbie seemed to have taken the news in stride but I know the reality of this will hit soon.

I can see that this is another blessing in disguise. Her life has been preserved. When I heard this pulmonologist run down the list of things structurally wrong with Shelbie's lungs, there seems to be no way this girl is still breathing let alone living. There is no human way. I pointed this out to Shelbie as we wearily made our way home late last night. She agreed and can also see how blessed her life has been.

I am grateful that through my fatigue, anxiety and worry, I can find God in the mix of rotten things. It's hard and takes a lot of work but it's worth it to hold on to that! It's even harder to keep these little mercies in remembrance.

Thursday, June 23, 2016

This image and thought has been on my mind this week. It's just been a tough week. There are the obvious things that make it hard lately but there are host of problems that aren't at all visible to the passerby. At any rate, it's been a struggle.

So the story of Emmaus goes...

Three days after the Savior's death, two of His disciples walked the dusty road from Jerusalem to Emmaus. As they spoke, they were joined by a traveler who asked about their conversation. The disciples replied, "Art thou only a stranger in Jerusalem...they have crucified [Jesus]. But we trusted that it had been he which should have redeemed Israel."Then the stranger said, "Ought not Christ to have suffered these things, and to enter into his glory?" He then opened the scriptures to them, showing how all of the prophets had testified that Christ would be crucified and rise on the third day. As night fell the disciples asked the traveler to join them for a meal. Sitting together the stranger, "...took bread, and blessed it, and brake it, and gave to them. And their eyes were opened, and they knew...[it was Jesus]." - Luke 24:17-32

On my dusty road to Emmaus,

I have found myself at 1 in the morning, praying desperately to understand why everything has to be so hard. Praying for something to change.

I have found myself at 2 in the morning, pacing my house, gazing out at the dark sky speckled with flecks of glittering light and wonder why everything can be so still but my head.

I have found myself at 3 in the morning, staring up at the ceiling until 6 in the morning when my alarm goes off and with a little sip of leftover anxiety and fatigue from the day before, my heart starts slamming against my ribs, my feet hit the floor and I pray we get through another day.

I think that maybe I'm experiencing a little fog in my perspective. Try as I might, I can not get above the soupy view I have. I am holding on to this sorrow that at times, is so great and burdensome, I can't see any hope in tomorrow let alone understand what God is doing with my life. Surely, there is more purpose to my soul here than just suffering and stumbling through the day.

I am trying to invest in patience, perseverance, perspective and courage... I tell my kids all the time..."Don't judge what God is doing with your life, let him teach you, let His plan for you unfold and watch closely as you are amazed by his miracles."

Lately, I just rush to put my own meanings on what is happening to us. It's just how I'm wired. My brain needs to make sense of the suffering otherwise, it's just a painful sadness.

Every time I pray for understanding, the message I get is that sometimes, you just have to endure. And that... is wearisome. I know that, like the disciples on their way to Emmaus, I will realize that in the enduring and the wrestle here in mortality, I will see that the Savior was always there. I will see where he kept me going, where he held me close. I will see that he mourned with me, cried with me and rejoiced with me. In that, I suppose lies the hope that tomorrow will come with more trouble or not but I will watch and wait for those miracles.

In the meantime, I'm trying to find my home in the moment and not be completely ashamed and embarrassed by my life that is a revolving door of problems. It's even been hard to write one line on this blog because lately, it just seems too big, too many problems...too much of a downer. But, it's my life. The good the bad and the ugly and some day, by the grace of God, I'll be done this test and hopefully learned a thing or two and maybe even graduate to become some harp player on a cloud of peace and quiet.

This image and thought has been on my mind this week. It's just been a tough week. There are the obvious things that make it hard lately but there are host of problems that aren't at all visible to the passerby. At any rate, it's been a struggle.

So the story of Emmaus goes...

Three days after the Savior's death, two of His disciples walked the dusty road from Jerusalem to Emmaus. As they spoke, they were joined by a traveler who asked about their conversation. The disciples replied, "Art thou only a stranger in Jerusalem...they have crucified [Jesus]. But we trusted that it had been he which should have redeemed Israel."Then the stranger said, "Ought not Christ to have suffered these things, and to enter into his glory?" He then opened the scriptures to them, showing how all of the prophets had testified that Christ would be crucified and rise on the third day. As night fell the disciples asked the traveler to join them for a meal. Sitting together the stranger, "...took bread, and blessed it, and brake it, and gave to them. And their eyes were opened, and they knew...[it was Jesus]." - Luke 24:17-32

On my dusty road to Emmaus,

I have found myself at 1 in the morning, praying desperately to understand why everything has to be so hard. Praying for something to change.

I have found myself at 2 in the morning, pacing my house, gazing out at the dark sky speckled with flecks of glittering light and wonder why everything can be so still but my head.

I have found myself at 3 in the morning, staring up at the ceiling until 6 in the morning when my alarm goes off.

I think that maybe I'm experiencing a little fog in my perspective. Try as I might, I can not get above the soupy view I have. I am holding on to this sorrow that at times, is so great and burdensome, I can't see any hope in tomorrow let alone understand what God is doing with my life. Surely, there is more purpose to my soul here than just suffering and stumbling through the day.

I am trying to invest in patience, perseverance, perspective and courage... I tell my kids all the time..."Don't judge what God is doing with your life, let him teach you, let His plan for you unfold and watch closely as you are amazed by his miracles."

Lately, I just rush to put my own meanings on what is happening to us. It's just how I'm wired. My brain needs to make sense of the suffering otherwise, it's just a painful sadness. However, I know deep down that I can't forget that this is just part of the plan. THE Plan.

Every time I pray for understanding, the message I get is that sometimes, you just have to endure. And that... is wearisome. I know that, like the disciples on their way to Emmaus, I will realize that in the enduring and the wrestle here in mortality, I will see that the Savior was always there. I will see where he kept me going, where he held me close. I will see that he mourned with me, cried with me and rejoiced with me. In that, I suppose lies the hope that tomorrow will come with more trouble or not but I will watch and wait for those miracles.

In the meantime, I'm trying to find my home in the moment and not be completely ashamed and embarrassed by my life that is a revolving door of problems. It's even been hard to write one line on this blog because lately, it just seems too big, too many problems...too much of a downer. But, it's my life. The good the bad and the ugly and some day, by the grace of God, I'll be done this test and hopefully learned a thing or two and maybe even graduate to become some harp player on a cloud of peace and quiet.

Sunday, June 19, 2016

I'm a lucky girl to have a great dad to honor today. I wish I could have spent the day with my parents but that doesn't happen very often because of the miles that divide us. But, I am remembering all the great things that make my dad awesome.

Last summer at Lake Coeur D'Alene

A little day trip to Jackson Hole last Spring.

I remember every Christmas, my dad would make his traditional shortbread cookies. I stand beside him and watch him bake away. Now, every Christmas, I make the same recipe of shortbread. The funny thing is, I don't even like shortbread. I never ate one of those cookies and still never eat a shortbread cookie. I just liked that I was spending time with my dad.

We often had kitchen adventures. One night, we wanted to try making sweet and sour sauce, or maybe it was teriyaki sauce. Neither one of us had a clue what we were doing and when the sauce didn't seem to be getting thick, we added a little corn starch. And then a little more. I think we thought it was going to instantly thicken up. Turns out it finally got thick...thicker than wallpaper paste! Thick and disgusting. We still laugh about that.

My dad was always making up games and songs and stories. He was the dad that everyone wanted to be around. I remember when I was 17, my dad suggested that I have a New Year's party. I didn't have any friends but apparently he thought I did. I started spreading the word that people could stop by my house for a party. So many people came. To this day, I think they just came to party to be with my dad. Everyone loves my dad. In fact, I ended up going to bed while everyone stayed to play pool and games with my dad!

He is kind and caring and always had something to give to those less fortunate. He is always full of adventure and it's something my kids love about him. He is a good sport. Just last month, Sam was going through video's on his phone and found an old one of my dad. On a visit quite a few years ago, Sam suggested he play an Xbox game with him. The game was Wipeout and you had to get through an obstacle course but rather than play with a joystick, you actually had to put your body through the motions of getting through the obstacles. It was funny. When Sam pulled up that video, we had a good laugh, as if it was just yesterday.

From my dad, I learned to budget money, live frugally, give to others, approach life with a sense of humor, and good fun. I remember the quiet times we spent in the early morning hours in front of their bedroom fireplace while we read the scriptures. Now when my dad visits, I appreciate our talks about Christ and the gospel.

I have more blessings than I can possibly handle! Thank goodness I have a 72 hour kit just chock full of plastic tarp and duct tape! Saved me a trip to Walmart at midnight and a few bucks! My whole upstairs looks like a scary lab with some particulate about to take over the world.

A little Youtube tutoring paying off! I feel the need to send all these men who post videos on how to fix things, a Father's Day card! I couldn't get by in my poverty without them! What a blessing they are too! They just don't know it!

This is a picture after the first quarter inch layer of sub floor came up. Thankfully, some good friends came by for an hour or so to help me get that top layer off. Once I got it started, it came up pretty good. I was really glad for their help, mostly because I finally stopped crying when they were there. It felt good to not be on the verge of tears for a few minutes...I have enough wayward water to deal with! Even my Wasband stopped by to help us with the last little bit of cutting the sheetrock out before we had to stop.

The Wasband was able to help make a few cuts to get me started on the main subfloor before he had to leave. That subfloor sucked!! It was such thick wafer board and they used 9 million nails and staples. I think whoever installed this floor must have been blind. They were just shooting nails and staples in willy nilly and they used no glue whatsoever! The nails were every 1/2" into the joist. It was a pain. I think I was praying every few minutes because it just wasn't coming up. After that it just sort of clicked. It wasn't easy but I did it!! I felt so accomplished. See what a little poverty does to a person? It makes you smart!

Just before I got the last little bit up around the toilet drain, the contractor who was suppose to come at 8am, showed up. He cut around the drain for me which was a blessing because I didn't have a saw to get close enough. He was gone in 5 minutes.

Those floor joists you see there are quite wet and mold was growing between the sub floor and the top of the joists. Mold was growing up the studs, in some areas as high as 6 inches. But...there was NO mold on the sheet rock of the kitchen ceiling!! Therein lies the real blessing.

All of this is a blessing because if it had of gone on like this for another week or two, I would have lost my kitchen ceiling and all those joists! When I first got divorced and started my business, I worked with a woman who had to have every single stud in her house replaced because of mold.

Even still...I'm left wondering why God always has to teach me things in the hardest way possible? I'm not entirely amused but he did give me some fierce strength and unusual brain power to figure out how to tackle this project and get it done as fast as I did.

I think I'll write a self help book called, "Everything I needed to know I learned from being poor." I literally am so low on funds that putting this through insurance is not even possible. I don't even have enough to cover the deductible, plus I couldn't get any co operation out of them. I can't really afford to hire professionals. I had tried to work out a trade but that wasn't working out so that leaves one person to do it and that's me. All 100 pounds of tough, hard core, stubborn, angry, gritty me!

My plan is to vacuum up all the sawdust tomorrow and then scrub all the wood down with a solution of bleach and borax with a wire brush to kill what mold I can. Almost all of it is gone but there is some on the studs and the sole plate and joists. I will also scrub down the wet joists to kill anything starting. I will let that air dry for a week or so and then paint several coats of a mold blocker primer over everything! I had to pull up Sam's carpet and the hall carpet to let that dry. I think it will be fine since the carpet hadn't started to delaminate yet from the backing!

While I wait on that, I will have an electrician inspect what is happening with my kitchen lights feeling like they keep shorting out. I will replace all the plumbing valves...I watched a YouTube video on that...but I will hire a plumber to replace the toilet drain, one sans mold, and set the toilet correctly. I will watch closely and take copious notes so that I can re set the other two toilets in my house. I'm guessing they too were installed wrong!

When all that is done, I will re install a new subfloor, some backerboard and new tile! I will saw off the bottom of the vanity, add a new bottom, some new legs, fresh paint and Viola! Bathroom done...and if it all goes well, it will be done in time for Christmas!!

Ugh...Oh well. It can always be worse. Just wait...it will get worse! Sorry...that's my bad attitude surfacing again but let's be realistic...I kind of have bad luck!

I'm pretty sure I won't be moving tomorrow. Tonight, I am covered in hives from my neck on down! I think I'm allergic to work like this!

Well, I had a contractor come over last night to take a look at the damages and give me some pointers on tearing out the sub floor down to the joists. I know/thought I could do it but just needed some guidance. I have found if I understand how something is built, I can totally figure out how to take it apart. I just wasn't entirely sure which direction the floor joists were going and I needed him to tell me.

So, I thought it would be pretty simple but nope.

The toilet was never sealed. It was never, ever, since the beginning of time, even touching the wax ring that seals the toilet to the drain. The seal looks brand new! You can still see the imprint on the wax that it was made in China. This means that for 11 years...toilet water has been leaking freely into my floors.

I am sick. Sick beyond belief. What a nightmare. Clearly, this is beyond my skill level to accomplish what needs to be done. I have more time than I do money so I was geared up to fix it myself. My contractor said this kind of installation problem is extremely serious. Just judging from the thick white mold we can see around the toilet drain, when we get down to the floor joists, it's going to be an ugly sight I'm guessing.

Sam and Shelbie have next to no white blood cells. Their lungs are in horrible shape with arteriorvenus malformations which makes their heart have to work overtime. What is more worrisome than mold is the fungus spores that goes along with it. Kids in bone marrow failure can become hospitalized and even die because fungus gets in their lungs. Sometimes I think fungi are worse than a bacterial infection because they don't respond well to treatment. Because of the high risk now...my kids moved out last night. Makes me so sad. I'm sad but I'm incredibly angry at the useless person that built my house, the City and the men who were paid to make building inspections on my house but clearly didn't.

I've had the roof replaced three times, literally dragged Shelbie from the house when we had a carbon monoxide leak because the hot water heater was mis-plumbed, had every single basement window leak water, there was no trim, flashing or caulking behind the stone on the front of the exterior, so water would flood into my basement and that's just the beginning of problems I have had in this house. The development I live in sued the builder a few years ago because the entire property was fraught with problems like mine. We won the class action suit and received a great deal of money to fix the problems. I have spoken with members of the HOA and of course, they aren't going to address this since it was not a problem specifically listed on the lawsuit. That bugs me. There is such a thing as doing the right thing. Whatever. I have no more fight in me.

I had an awesome pity party for myself Wednesday night so now I'm trying to see past the anger I feel and recognize that maybe, it's a blessing to have found it now. Obviously, it poses a serious health threat to our family. Continuing with these unseen problems would just get worse. It's a blessing that I have so many connections to builders and I know who I can trust. It's one of the few times I'm thankful to be divorced so my kids have another home that is comfortable and safe where they can stay. Their dad will enjoy the extra time to spend with them.

Once we get the nasty stuff pulled out and hauled away, I will rent some air scrubbers and clean the air and deep clean this wretched place from top to bottom before I let my kids move back. I waffled back and forth on what to do but after contacting one of our docs and doing more research from reputable sources, I felt strongly that this what I needed to do.

After work last night, I spent another couple of hours hanging tarp and sealing it off with duct tape. There is just a hallway of tarp now from the back door to the upstairs bathroom so, hopefully, the fungal and mold spores will remain contained in that area and the rest of the house will be okay. I bought more HEPA filters meant to filter mold and fungus for the furnace and did more cleaning. I know the contractors are going to think I'm crazy when they get here this morning but I don't care. I haven't spent my entire adult life trying to keep my kids alive and healthy so I can slack off now.

Well, that's all. The more I type, the more the anger and pity sets in so enough of that. The work is suppose to commence in an hour. I just want this over. It makes me sick.

Thursday, June 16, 2016

I realize life is not meant to be easy. I realize that we are here to be tested but seriously...there comes a point when enough is enough; a point when the trials are no longer educational...it becomes nothing more than just mustering up a little more shear grit to get through one more day. It's about how long you can hang on the end of the proverbial rope by the tips of your broken and chewed off fingernails!
That's all. That's all my life is about. I'm to the point where I no longer expect anything good to come out of my existence here anymore. There is no spark of hope to muster up. No faith. No inspiring thoughts. No clever adage. No pulling up your boot straps...the big girl panties are too big and keep falling down anyways...so really...I'm done.

Here's my white flag.

In case you're wondering...I had a little reckoning moment with God too. It wasn't pretty. There was a lot of ugly crying going on. Even my Wasband who came over in the heat of the moment was shaking his head in dismay at "ONE MORE THING" gone wrong for us.

Tuesday, Shelbie's camera broke in the middle of a photo shoot. The shutter failed. She had three photo shoots planned for Tuesday. It takes 3-4 weeks and $500 or more to fix a shutter. We raced into the nearest city, bought a $2200 camera and raced home. I bought a $2200 camera. I had that much left before my only credit card is officially maxed out. She will pay me back but it sucks. For both of us. She cried half the day over the camera and the fact she couldn't pay for it herself.

Wednesday, she had her transfusion. The nurse wanted to see the wall treatment we did in Spencer's room so I took her upstairs. I noticed that Sam's bedroom carpet and the hall looked filthy. I made a note to remind Sam to take his boots off when he comes home from work.

When Sam got home from digging a grave at the cemetery, he asked what happened to his carpet? I said, "I was going to ask you the same thing?"
"It's soaked. It squishes when you walk on it."

I raced upstairs and sure enough, water everywhere! Not just water. The vinyl was curled up so I pulled it back and there was mold everywhere! 4" up on the baseboards, the toe kick of the vanity and the vinyl was squishy with water underneath.

I cleaned up the surface water, and sprayed the visible areas of mold with bleach and spent 45 minutes scrubbing the walls and mold but then I realized it was just a bigger issue than cleaning. I don't know how no one noticed this problem sooner! It's obviously been leaking for a while. Makes sense since my kitchen lights keep shorting out and the kitchen is below the bathroom.

Mold and all the floor is wet and swollen with water.

More mold and wet 4" up the vanity

Sam and I worked our little hearts out to take out the toilet, remove the marble countertop, without breaking it, and then dismantle the vanity.

It was so disheartening. After work last night, came home and had to spend another 2.5 hours vacuuming up more water that had surfaced on the carpet and I was so mad and freaked out about the mold and just couldn't stop cleaning!

Part of me wonders just how much hype surrounds mold and what the real facts are. I have three kids with lung disease so it's not like I can take any chances. I worried that I was being irrational by pulling it all out but I think I did the right thing. Plus...It's been smelling so bad upstairs lately, but now I know why.

After I finally calmed my head down sometime after midnight...I made a better plan. I think I can do most of the work myself. I took it all apart, how hard can it be to put it back together and I've laid flooring before and I have now pulled a toilet and I know how to set a toilet...well, I've helped set a toilet about 20 years ago so it's like riding a bike right? I think I know where it's leaking and I'm sure I can replace those connections easy enough.

I have a few builders I know who I draw plans for on occasion so I am going to try and trade some work to get a new subfloor installed. I spoke to one this morning and he even offered me some extra tile pieces he has. I think I can carefully cut the base of the vanity and I think I'll add some legs to the corners so it is open underneath and looks like a piece of furniture. That way, I think I can reuse it. Thankfully, we didn't break the marble counter top so we can reuse that.

Shelbie had weird reactions last night to the infusion. Monday, out of the blue, I got a call from a Pulmonologist in Utah who wants to see Shelbie next week. I guess our Oncologist really wanted her to be seen and so he made the referral but forget to mention it to me. It's fine really. She does need to be seen again since breathing is more of a struggle than it use it be. We will have just a week or two break and then a mass amount of appointments filling up the entire last two weeks of July.

I've never asked 'why me' and I don't plan to anytime soon. I do wish I understood why we can't seem to catch a break. It's exhausting.

Sunday, June 12, 2016

It is interesting how much life can change and has changed in just a few weeks, perhaps it's just been days.

One evening, Shelbie and I sat on the stoop watching Sam ride the penny board with Bentley

Brothers making videos together- I love this picture so much!!

Bowling with Sam- Blacklight bowling and I beat him!! 151 for a personal best!

There is a different feeling in the house now that Sam has graduated. Maybe it's just a shift in energy and now that I think about it, perhaps it's just me who has changed...is changing.

The point is not lost on me that I have to change my role as a mother; I have to change the way we do things. I can't expect or assume that dinner will be eaten as a family. Now, we all have commitments and different expectations.

Curfews are a thing of the past, yet, my worry when I don't know when they are coming home or where they have been didn't seem to get the memo that things are different when you have adult children.

Family scripture study has to be revamped.

Family Home Evening isn't the same...that's been different all year actually. As I look back on our life, it's the one thing I can say without a doubt, we succeeded in doing faithfully.

It's been hard work to mentally let these things go or at least change. I've been trying to come up with ways to continue to have a positive influence on my kids, stay connected, yet still let them grow, mature and develop their own personal traditions of discipleship and adulthood.

It is not just going to happen on it's own. Unless we carve out time when we can connect, and make extra efforts, we will drift apart. So, it's going to take some work. Lots of work. Constant effort to maintain our emotional closeness even though we are in further, physical proximity to one another.

The real struggle is, that I'm just not ready to be done mothering them in the way I've always mothered. I realized that the one thing I am really going to miss is seeing them grow and develop in their relationship with God. Being a parent is such a sanctifying project. Such a rewarding endeavor when you see them figuring life out, even in the midst of mistakes. I'm sure it will all work out but it's a time of transitioning and trying to figure out this new chapter of adulting.

I think it's safe to say that right now, we are all in the Wilderness of Wandering. When I think about how hard things are for us right now, I just say... WOW. All of us have something we are grappling and struggling with. As I look out on my little flock, I see how they are already growing apart and becoming satellites from each other. They will only venture back around every now and again. They are missing the struggle of each other because they are so focused on trying to figure themselves out and where they fit in this world of adversity and change. With that, my influence seems to be fading too and that is sort of heartbreaking. Not that I have some magical influence over them but how are they ever going to know what not to do in life if they don't see my blunderings every single day?

As I reflect on the week, I realize how blessed I am that I got to spend some time visiting with Spencer on the phone and celebrate his new job this week. I got to spend a couple of hours with Sam bowling and I still have one day a week when Shelbie as she spends the day getting plasma pumped in her at home; we get to laugh and connect. And last night, in a rare moment, both kids came home about the same time. I had chosen to stay up and wait for them, so all of us got to laugh and snack in the kitchen at 1 in the morning. I tell you, it's those moments that are priceless to me.

So, today at church, I had an epiphany. I thought of a project I am going to engage in to keep us together in heart and spirit. I'm going to get started today. Hopefully, fingers crossed it can be a new tradition in our family that will help me handle this wandering and transitional stage a little better. More on that later...for now, I'm going to keep it under wraps.

Friday, June 10, 2016

I am finally coming back to the surface of life...slowly, after a debilitating round of steroids for Lupus. People ask me what Lupus is and I really couldn't tell you. I've only known I've had it for a year and I haven't read up on it. I just know it makes you feel like your dead but still in pain. A painful dead kind of thing.

And...I know that once you have been diagnosed with Lupus, no matter what you go to the doctor for after that...they will blame every single symptom or illness you have on Lupus.
"I have migraines." Yep, that's Lupus.
"My left toes just fell off." Yep, that's Lupus...you're having a flare.
"I have this growth the size of a basketball growing from my elbow, is that normal?" Yep, that's just Lupus flaring up.
"I have this urge to bark like a dog when I walk past a fire hydrant." Yep, that's your Lupus. You must be flaring.
"I sometimes have this break with reality and I think I'm a pirate and walk through the grocery store saying...Aye,Aye Matey!" Yep, that is definitely LUPUS!

I don't get it. Must be Lupus.

Anyways, where was I going with this...

Oh ya, we've got some exciting things on the horizon. I'm working on a new job prospect that would allow me to quit my half a dozen part time gigs which would make me the happiest creature on earth. That would bring my job collection down to just three! Instead of nine. Yippee.

Though, I have this horrible habit of counting my chickens before they hatch, putting all my eggs in one flimsy basket that has a broken handle, I've probably jinxed myself now. But, what the heck. If it doesn't work out, so be it. Can't blame a girl for trying.

The one thing that is going to work out though is sort of exciting, in an introverted kind of way...I was asked about a month ago, if I would consider being on a Panel at a large hospital in a neighboring town to help them and their providers learn better ways to handle patients, provide empathy, create a more healing environment from a patient /provider stand point. I do have some thoughts and ideas in this area...just a few. So, I am thinking about this a lot. I'm nervous. I tend to just keep to myself but it might be a good thing for me to do. That's coming up in August.

In just a few weeks, Shelbie has another PET scan to track her granulomas and lymphadenopathy. If any of them have grown at all, she will have to have surgery again. At least that was the plan 2 months ago. I don't think the transfusions at home are working at all. She spends more days sick than she does feeling well. It's sort of a joke so we will re-assess that again.

Thursday, June 9, 2016

This week, Sam had to renew his license and register for The Draft. We are a little late, obviously, like a month late. Each time we went, the line up was out the door and I didn't pack snacks and games and we hadn't allotted an entire afternoon to waiting around the DMV so we left.

However, since Sam really needs a fishing license and you can't get one with an expired driver's license, it became a more pressing matter. Yes, that's right...fishing is far more important than getting pulled over and having an expired license. Fishing is more important than just about anything some times...apparently...even though we don't eat fish. We don't like to touch fish and it's heartbreaking to watch a fish die. And...what's the deal with having to be a licensed driver in order to fish? What's that about? According to Walmart, it's more than just a form of ID. I guess they really want 'quality, responsible citizens with transportation' yanking fish out of a river. Way to make a stand Walmart!

Anyways...off we went to the DMV. I don't remember doing this with Spencer, I think he just took care of it on his own. It was mostly my debit card that needed to be there with Sam, not necessarily me! Ya know how that goes when you have adult children who haven't quite established the adulting vision in their minds yet?

So, we waited and waited and were totally amused by the impatient mother trying to bribe other patrons into letting them move ahead because her daughter's learners permit was far more important than our need to sign up for the Draft and get a fishing license...or whatever else business people had there. Some people have lost their sense of priorities.

Anyhow...they finally call our number and we sidle up to the desk and lay out our business . The woman behind the desk says, "So, do you want to register for the draft while you are here?"

"Well, do we have a choice?" I asked
"Yeah. You don't have to register if you don't want to." She said.
"Oh really? Cause I thought that was a mandatory thing."
"No, you don't have to. You can do it some other time." She said.
"Wow, I guess the rules have changed. I always thought you just had to no matter what."
"Well, if you choose not to, they will come after you and find you and then you have to pay $250,000 and spend some time in jail. So, do you want to wait or register now?"

That pretty much put an end to our humming and hawing.

"Well, since you put it that way, I guess we may as well just register now. I had sort of ear marked my extra $250,000 laying under my mattress for reupholstering my chesterfield. Thanks for helping me decide."

Sam and I both left rolling our eyes. Do they really think Americans are that dumb to not see past their smoke and mirrors of freedom? Maybe we shouldn't dwell on that question... Apparently, given the candidates we have to choose from for the upcoming election, Americans would rather pretend they are best country in the world with all the freedom they could ever want, than admit they are being completely controlled by a bunch a lying, bloated egos. Like the Wizard in Oz. The government calls all the shots and like a bunch of oompa loompas we follow along because we are just the little people.

It was funny but at the same time infuriating. Got me thinking about all the other ways we think we are free but we aren't. The stupid Obamacare...We've all discovered that didn't get to keep the insurance you liked but more than that, at least in our case, Obama told me that between the 4 of us, we have to have 3 different policies! That's right. Three completely different insurances for the 4 of us. I have to keep track of insurance rules, deductibles etc...times 3! Ridiculous.

Well, that's all for my freedom of speech tonight...The moral of this story, is that Sam can now go fishing and I didn't have to spend my nest egg or any time in jail...though, I'm still thinking jail wouldn't be so bad. A little solitary confinement with a good book and crust of bread sounds like a vacation to me! And...I don't mind the color orange, it's the new black I hear!

Tuesday, June 7, 2016

I'm so excited about tonight's post. On Mother's day, the kids and I ran away to this very secluded place on the river. We stumbled upon it actually and it was pretty perfect. There was not a soul in sight and we just sat around talking and laughing and slacklining and playing in the water.

I have always had this little dream of video taping my life. I love to document my life in video but my kids are never keen on the idea. I have a collection of half made videos. When they asked me what I wanted for Mother's Day, I told them I wanted a video of them just being happy and having fun.

Spencer has been working on his video skills and he is getting really good! I love to watch his videos so he brought along his GoPro and made the sweetest video for me! He just sent the finished one to me tonight.

The quality here is poor because most of the clarity was lost in sending such a large file but I didn't want to wait until I got the DVD copy. I really needed a smile today and this did it. A wonderful surprise!

Sunday, June 5, 2016

It seems at every major milestone or important birthday as they come of age, there's a 'talk' that must be had. You know the kind of talk I'm referring to. Sharing.

Just kidding...The birds and the bees for one. Dating etiquette. I have a list of 'Talks' that outlined rules of conduct for my kids. My kids lovingly refer to these talks as Car Talk! Yep, they know they are in for it if I announce a long drive with a Blizzard from Dairy Queen. Nothing like food and the restraints of the seat belt to get your kids attention. If any of our Car Talk topics came up at other times, they stop me and say...'NO, not now, that is Car Talk!' So, I would promptly load them in the car and stuff some cookies in their little gaping mouths.

Now, sometimes the talks were instigated from them. That was usually when they had something to confess. I could always tell what was coming by the size of knot in my stomach. They never once offered me a snack to eat while digesting the disturbing news. You would think after all these years, they would have at least learned my favorite parenting trick to make them more receptive. Food is always the answer! Always.

So, where am I going with this?

Well, as the story goes, the kids hung out with their dad on Friday night. I stayed home and engaged in my usual weekend activities- work, laundry, house cleaning...basically hiding out. The world has been awfully Peopley lately and I'm not one for crowds, big or small. I did my thing until they came home just before midnight at which time, I began to button up the house for the night, which basically means another 45 minutes of locking up, turning off lights, making sure the kitchen is spotless...you know, the last few hundred things on the daily To-Do list, when I was interrupted by Shelbie.

"Mom. We have something we need to talk to you about. You might want to sit down."

Oh GEEZ! Eye rolling..."C'mon! What?!" Then I drop myself down on the couch like a 7 year old about to throw a fit. I really don't want anymore trouble to deal with and the knot in my stomach was pretty impressive.

"Well, us kids were talking and before you say anything...We really think you need to start..."

"DATING"

Oh GEEZ! More eye rolling..."NO! I don't."

"Yes, you do. We are going to set up a dating profile for you online. Just give it a chance. You always told people that you would start dating when Sam was grown up. Well, he's grown up. You need to get out there."

"I'm fine. I don't need some man to take care of. I have enough to take care of without adding someone else to the mix. No. I'm not dating."

"MOM! We really want you to! We don't want you to be alone anymore. It makes us sad. All you do is work and take care of people. Us. Please! Just let us."

NO, NO, NO...did I mention No?

Those darn kids. It's true, when I got divorced I had promised myself that I would not concern myself with dating until my kids were grown. I just feel like I needed to focus on my job as a mother, since it suddenly became twice as hard, and I am confident that I am not one of those women who can do it all and do it well. For me, it's all or nothing and that's my attitude with dating. For 11 years as a single mom, I wanted my kids to have all of me. Plus, I have seen firsthand, the difficulty that comes with trying to blend a family and take on a new spouse who may or may not love my kids as much as I love my kids. I don't ever want to be in the position to choose between a spouse and my kids. It's hard to make that work and it's not for me. To me, a person isn't just dating me, they are dating my kids too...if they don't like my kids, I'm not going to like them. If they can't respect the time and attention I want to give my kids, I will never be happy.

So, dating has been risky venture. Not only that, I sort of come with a lot of baggage and we are not for the faint of heart. Chronic illness takes a toll on a marriage. I know that firsthand how even your best efforts fall short. Too short.

I have been on a few dates. Just to clarify...with men. But, even those dates ended badly...usually turned into a stalking event that required police intervention. A few of them still lived with their moms, were alcoholics, twice my age, couldn't hold down a job. One time, my kids called the police on me when I was a little late. And...get this...most of them were blind dates that 'friends' set me up on! Sheesh. I started wondering about who my friends were! After the embarrassing moment of explaining to my date, a popular radio DJ, why the SWAT team was at my house when he dropped me off...that was the last I ever attempted to date. It was more hassle than it was worth.

Now, I'm old and tired and I'm afraid when they asked me what I wanted to do, I would have to say, stay home and take a nap?

I don't know...I'm just not sure dating is for me. Especially online dating. I naturally attract the creepers, the lost, the forlorn...and bringing in the world wide desperation from the web seems more than a little overwhelming.

So...that's my story and I'm sticking to it. My kids are pretty disappointed in me. I know they mean well. Actually, maybe they are scared I'm going to start adopting cats and spend hours in my room knitting scarves for them and dressing them up in play clothes. I might do that. I might not. Who's to say.

I always use to joke that they should find me a gay man to date. You get a nice night out, they typically love shopping and have good taste. They are extra sensitive and give out great hugs but beyond that, there are no expectations! Or a trucker was a close second too...They come home once a month. Bring a paycheck. I do their laundry, pack their cooler, and send them back off after a lovely weekend until next month. Sounds just about perfect to me!

Okay, I'm just kidding. For now, we agreed that I will remain single and keep my crazy to myself. I assured them that they don't have to plan their life around me and with or without them, I will survive the single life. Maybe if they had of breached the subject with a Chocolate Soft Serve Sundae from Dairy Queen, I might have considered their offer!

Saturday, June 4, 2016

The good news of the week is that Sam did in fact return from his camping trip! Yay for little miracles.

They actually came back late Thursday night. I was surprised to see him walk through the door. I hardly recognized him though! He ended up with 75 mosquito bites! One eye was drooping and swollen and his whole face looked lumpy and bruised from all the welts. He looked miserable despite all the bug repellent he used. He said he also encountered 3 ticks.

Sam and his friends slept in a hammock stack as well. It seems to be the favored way to sleep outside these days. The hammocks they have are a thin nylon and they wrap up in it like a burrito. I imagine it would be much more comfortable than sleeping on the ground or even on a foamy.

A little Sam selfie! Relaxing in the hammock while the sun sets over the mountain.

They ended up staying at a base camp and hiking without their packs during the day. Sam said the hike up to the natural hot springs was beautiful but nearly killed him. He had to stop every hundred feet or so to catch his breath and try to slow his heart down. He did this for 7 miles! Two of the guys said they were getting pretty concerned about the state he was in. I think it must of scared them because he always seems so strong and fit and Sam goes to great lengths to keep his health problems a secret.

One of his buddies has had two open heart surgeries and that young man seemed to have no problem at all with the hike. Sam was a little upset at how hard it was for him to keep up. He's not use to feeling defeated physically.

There's always a part of me that just wishes these kids would not play so hard. Part of me wishes they loved video games and would just sit at home but I know that isn't how they were meant to live life. I know that they worry about how many good years they have left so they will continue to push their physical limits while they can and I will continue to dig in my heels until the anxiety floods me and then subsides into acceptance. I'm proud that they still keep pushing through and I honestly wouldn't want it any other way.

Friday, June 3, 2016

Every month, I try to take an online class of some sort. I don't really have an agenda, it's something I do so my mind doesn't get lost in medical drama, kid drama, world drama...just something small that challenges me.

This month, I am taking a class from Elle Luna over at Skillshare. It's called Choose Must. She is an artist who has written a book on finding your passion. It has been a fascinating class and I wonder every day about my MUST. While I dream of my must, Spencer lives his must.

My boys have always lived their must but Spencer especially, excels at it. He grabs life by the horns, harnesses the energy of every minute and doesn't look back. The month of May, he spent padding around the Pacific Northwest and Canada. He was the brains behind this adventure and roped 7 other guys into the trip. So, with very few funds, a rented van and a duffle bag, he set out to follow his Must.

Week one...the scruff on his face makes him look so old!

For three weeks, they slept under the stars in hammocks. He had an amazing time. Spencer was truly in his element. The guys made it home last Monday so we had a big bbq for the weary travelers and enjoyed looking at his videos and photos. They found the most beautiful places that I will probably never see because I never venture far from the beaten down path.

I was a little jealous that he has found his passion at such a young age.

Week three...a face only a mother could love! I'm not a fan of the beard but he seems quite attached to it!

Their sleeping arrangements on whatever tree they deemed suitable in whatever forest they happened to be in. A hammock snack for bears!

He stuck around all week while his buddies headed back to Utah for job hunting. We have had a good week having him around. Since his mission, we have the best talks late at night and I'm surprised when I discover that he often takes my advice! He's definitely trying to find his way in life and that isn't easy but hopefully, he will stick to the process.

Towards the end of the week, his girlfriend came up to spend a day or two. The two were friends in middle school until she moved with her family. I never really knew her, other than she was probably Spencer's first heartbreak over a girl back then. I find it interesting that their paths have crossed again.

She is a really sweet girl! We had a great couple of days getting to know her. We laughed a lot and she seems to really like Spencer. She stayed here so it was interesting to see them interact with one another.

I will say, it was so sweet to watch Spencer fix her breakfast, clear her dishes when she was done. He tenderly took care of her. I'll tell you one thing...whoever gets that boy is going to be one lucky girl. He has a sweet heart.

Later today, after she left, we were talking about 'things'. As I watched Spencer with her, I asked why it is that men don't continue to treat their wives like that after a few kids have arrived and life settles in around them. I'm sure there are some men who do, maybe a lot of men, but mostly, we become comfortable and let that tenderness toughen up a bit I think... if I ever have the opportunity to get married again, I would certainly work harder to stay tender and attentive. I may have issued this as a challenge to him. (wink, wink)

Tomorrow he heads back to life in Utah. We will miss him so much but he has more MUSTS to live but a few shoulds too...like he should get a job. ;)

Thursday, June 2, 2016

Imagine what it would feel like to not understand time passing. 5 min, 5 hours, it's all the same. Imagine if a long weekend felt like an entire season of days or a whole summer felt like just a long weekend. Imagine if every word you read had numbers mixed into it. The letter 'S' became a 5...

The disorder is called Dyscalculia and it is a brain disorder and Sam has it. He was born with it.
Sometimes, it rules the days and weeks in our family and sometimes, we don't really notice it and Sam manages just fine... at least as far as I can tell. We have worked every day to find ways around it. It's been a struggle to keep him from feeling 'dumb' because it can make one feel 'dumb' but the disorder affects all levels of intelligence.

It took until 4th grade for us to figure out what was happening. Up until then, the line I always heard at Parent Teacher Conference was..."There's just something about Sam." No one could ever say for sure what was off.

One night, we had to do a million math sheets so before we started, I suggested we run through the flashcards of the multiplication tables. The flash cards were vertical in the way they were set up. He did great! We flew through those cards so I let him loose on the assignments, starting with the 2x tables. He sat there and stared at 2x2.

"C'mon. What are you waiting for? Get going. Write down the answer." I asked.
"I can't." He replied. "I haven't learned this yet."
"Yes you have! We just did it!" I was so confused and proceeded to get very impatient.
The whole night ended in a meltdown of tears and anger because it wasn't fair to make him do homework on numbers he had never seen before! I realized that because his homework had the times tables laid out horizontally, 2x4=8 instead of vertically, it was as if he had never seen those numbers before.

After months of psychological testing and thousands of dollars later, he was diagnosed with Dyscalculia and Dyslexia. His brain only processes in the 5th percentile but he is well over the 95th percentile in perception. The Psychiatrist said to me...This combination is so rare, life for him is going to be incredibly interesting.
Sam's reality is that sometimes, summer vacation feels like Spring break. When I clarify that he just had 3 months off from school...he feels like he wasn't there at all. He can't remember that time passing. He has a hard time recalling events that even took place over the summer. I have to remind him.

It took him almost two years to understand the concept of divorce. He thought, when we moved out of our home, that we were moving to a summer home and he kept asking when we could go 'home' or ask when dad was coming to visit. He said this even though he went to his Dad's every single weekend to stay and saw his dad one evening every week.

A doctor can tell him about his condition and if it comes up again a few months later, it's as if he's hearing it all over again for the first time. We are always reliving hard, hard moments because he doesn't remember them the first time. It's hard on all of us to do that.

I could go on and on...It's been an extremely difficult facet of life to deal with.

This week has been almost unbearable and it breaks my heart when I see him swimming in a brain that just can't work the way we think it should.

He has been talking about going on a big hike with all his friends. I knew it was coming up but I was counting on him to give me some notice when they had finalized things. He gave me about two hours notice on Tuesday night. He was caught completely off guard when his friends called him up to tell him they were meeting at Walmart to buy the food for the trip, Wednesday.

If you can let the emotion of it all go and just watch it unfold for what it is, it's completely fascinating but I couldn't quite get there. The problem is that this huge group of guys are planning and everyone has an opinion of where and when they should leave and some can go Wednesday but some will meet up with the group Thursday and a few have to come home early...Sam gets completely lost in the details of everyone else's schedule and he has no clue what is happening.

I was so scared at how upset he was when he got home from the shopping trip to pack. He was completely lost and confused. The Wasband came over and Spencer was home so together, we all tried to get everything together and help him get organized. By then, there was no way to get Sam calmed down. He was so completely overwhelmed. I took him up to his room and tried to get him to talk it out and move on but he just kept saying how stupid he is and dumb and he can't do anything...It was sad. Broke my mamma heart.

They are hiking up to some natural Hot Springs and it's a 7 mile hike. His pack ended up weighing more than is desirable for something like this and I was worried. I asked him if he was concerned about the weight of the pack and the length of the mountainous hike. His response just warmed my heart... "MOM!! I can't even walk up the stairs to my bedroom anymore without my lungs burning! What do you think?"

Ugh...Sometimes, I hate life. I wanted to tell him he couldn't go but I know he has to do this for himself. He is going with awesome guys and responsible guys. Sam is responsible and very smart and resourceful so I know he will take care of himself that way but I just worry the toll this is taking on his heart and lungs.

When I dropped him off early Wednesday, his friend said, "Hey Mom, (He calls me Mom) do you have any questions about the trip? There is a natural spring up there we can drink straight from so I hope you weren't worried about the water issue."

Good grief...I didn't even think about that! Sam can not drink out of a natural spring. Luckily, I packed our water filter/purifier and then had to pull Sam aside..."Over my dead body are you drinking from a natural spring unless you run it through the purifier twice!"
"Mom! I'm not dumb. I know that spring water would kill me. I won't drink out of it."

I just had to leave before my own brain exploded with all the things I was worrying about...Tics...I hear they are out in full force this season and Sam will be sleeping in a freaking tree! In a hammock!

So here we are on day two of his trip and he has no cell service so I'm just praying he is okay. I won't even hear from him until Friday night, maybe Saturday. I take hope in the fact that the friend 'in charge' has a Cop for a dad and Paramedic for a mom so if they don't come home...we have resources! Sad that those twisted thoughts get me through the day!

Can't they just be 2 years old again when life was simple, bedtime was at 7, naps twice a day...

Followers

About Me

"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14